Category: kidney donation

Talking to Potential Living Donor Champions

What are living donor champions? They are friends and family members of someone who needs a transplant who learn how to effectively spread the word to potential donors. Let’s say you know someone who needs a kidney, but they’re uncomfortable for any number of reasons about coming out and asking someone they know–much less someone they don’t know–to donate one of their kidneys.

Back in 2004 when we first learned that my son would need a transplant, the idea of asking someone if they would donate their kidney was beyond awkward. (People who have trouble asking for a ride to the airport don’t even know where to begin to ask for a bodily organ!) Though social media existed then, it was mostly a social thing for teens and 20-somethings–hardly a vehicle for something like life-saving/life-changing requests. Fast forward to 2019: Facebook, Twitter, and other platforms have changed the whole donation landscape, which dovetails perfectly with living donor champion efforts.

Betsy Crais, my co-author (The Greatest Gift: The Insider’s Guide to Living Kidney Donation), and I are going to speak at a few such programs over the coming months. We’ll start with one this weekend at the University of North Carolina’s kidney transplant center. That’s only fitting, because it’s where I donated a kidney to my son, and where Betsy received hers from a UNC colleague. We’re going to tell our stories and take questions from attendees.

I’m so looking forward to it. Watch for a post on the event!

National Kidney Month and National Women’s Month

Yes, March is National Kidney Month and National Women’s Month. What do kidneys and women have in common, you ask? Both groups are underappreciated! We can hope that someday we will get to a point where we don’t need to introduce people to integral aspects of our culture and our history (like Black History Month). For now, though, we obviously do. And this month we highlight the critically important role women play in our society. Similarly, we highlight the critically important role the kidneys play in our body.

Do you know what your kidney function is? You may think you know what women contribute to daily life, but do you know what kidneys do? For starters, they remove dangerous toxins from the blood, regulate the amount of fluids in our body, maintain the salt content of those fluids, balance minerals, produce urine, promote bone health, and so much more.

I’ve had a healthy respect for kidneys ever since my son was in dialysis. For nearly 2 years, dialysis machines, doctors, nurses, and technicians did a masterful job of trying to approximate what healthy kidneys manage to do every day.

Yet even with doing their damndest to get this juggling act all right, dialysis could produce only about 20% of normal kidney function. One-fifth.

Like women, kidneys pull off much of their heroic daily work quietly, often without calling attention to themselves. That’s why when kidneys are starting to fail, we usually don’t notice. About 30 million Americans have chronic kidney disease—meaning they’re gradually losing kidney function—and most of them don’t know it. It’s called “the silent killer” because people usually don’t feel sick (and often look fine) until it’s dangerously far along. I know of people who just had a routine screening at a health fair, or went to the ER for a broken arm, or just didn’t feel right—only to learn, to their shock, that their kidneys were failing significantly and they needed to start dialysis ASAP.

My son knew he had kidney disease ever since it was diagnosed following a strep infection when he was in college. He was otherwise healthy and was told to monitor the condition with routine blood tests, which he did, never showing or feeling any symptoms. It was only at a routine checkup soon after his college graduation that the tests showed a precipitous decline in his kidney function. Within a month he was having surgery to put in an access point for dialysis, in 3 months he was undergoing dialysis 3 days a week, and close to 2 years later, he was welcoming my left kidney into its new home. It’s lived there happily since 2006, by the way. (My right kidney is managing fine without it.)

So, this month, please make an appointment to have your kidney function checked with a simple blood test. (And be sure to thank a woman every day!)

Memories of One Mom’s Donor Evaluation

Besides the gamut of medical tests, the donor evaluation entails interviews with a psychologist, a social worker, a financial counselor, a surgeon, and a transplant nephrologist. Coordinating it all and providing lots of support, is a transplant nurse coordinator. This team of professionals was assigned to me. My recipient–my son–had his own. The idea was to avoid any conflict of interest and to ensure that the donor not feel pressured in any way. These providers had my interests at heart, and every one of them had been forewarned that I was a wimp. They were cool with that. They never made me feel foolish or ashamed for thinking about queasiness or dizziness at such a critical time for my son (I did that myself).

The social worker wanted to be sure I’d thought this through. We had a teenage daughter who was dealing with her own adolescent struggles. Also, we’d recently moved my elderly father down from New York, and though he didn’t live with us, I was his primary caregiver. “You’re the glue that’s holding this all together,” the social worker pointed out. “What’s going to happen when you need care yourself?” The question prompted lots of soul searching and discussions. My husband was very supportive of my decision (he’d also wanted to donate but was eliminated) and was already shouldering more than his share, so I knew we’d manage somehow. My main concern was the added stress on him.

Throughout the donor testing—the umpteen blood draws, X-rays, a stress cardiogram, CT angiography, lung function test, and more—my nurse coordinator was just a phone call away. Knowing my wimp background, she always offered gentle encouragement; accommodations like arranging to draw as much blood at a time as possible to avoid sticking me extra times; useful tips, such as lidocaine to numb my arm for the blood draws; and, thankfully, a warm sense of humor.

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After each test I’d call her nervously to see if I’d passed. I knew that even after months of successful test results, I could still be eliminated. (I know someone who was actually eliminated the night before the scheduled surgery. She was devastated.) Hmmn, how would I really feel if I were disqualified? Would I secretly be relieved (after all, I’d tried)? Much to my surprise, I realized I’d be crushed. I’d gone through many stages of adjustment in my decision to be a donor: initial determination, wavering, a new resolve, cautious optimism, and solidly back to determination. So when the psychologist later asked if I was still sure I wanted to do this, I had to laugh. “Ohhh yeah,” I said without hesitation.  

5 Truths about Becoming a Living Kidney Donor

There are still many myths about what’s involved in donating a kidney, and here are a few. I first included these in an article in 2017 and have already needed to update a couple of them because many aspects of the process have gotten easier. How many of the questions can you answer correctly?

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True or False: The surgeon removes a rib to get to the donor’s kidney.

False: Thanks to minimally invasive laparoscopic surgery (the standard of care), I had two tiny slits and a three-inch bikini incision.

True or False: Donors must be young.

False: More than a third of living kidney donors are over 50. It’s the health of the kidney–plus the donor’s overall health–that counts. I was 58 when I donated mine.

True or False: Donors stay in the hospital for a few weeks.

False: A typical stay is now 1 or 2 days.

True or False: Donors need to miss work for 3 to 6 months.

False: I could have gone back to my sedentary job as an editor in 2 or 3 weeks. A laborer might need a couple of months.

True or False: There’s no turning back.

False: You can change your mind at any point.  My transplant nurse coordinator, social worker, psychologist, nephrologist, and transplant surgeon all assured me that I could.  My son would be told only that I had been eliminated.

I just discovered an embarrassing glitch (aka technological error) in this brief post, so I’ve corrected it and reposted. It’s drawn (and updated) from an earlier, longer post I wrote for WELD’s blog. The original 2017 article appeared on the National Kidney Foundation website.

5 Truths about Becoming a Living Donor

This is from my original 2017 post on the National Kidney Foundation website.
 
…Throughout the donor testing—blood draws, X-rays, a stress cardiogram, CT angiography, lung function test, and more—the nurse coordinator was just a phone call away. She offered gentle encouragement, useful tips (like lidocaine to numb my arm for blood draws), and, thankfully, a sense of humor.  
 
After each test I’d call her nervously to see if I’d passed. How would I really feel if I were disqualified? Would I secretly be relieved? To my surprise, I realized I’d be crushed.
 
So when the psychologist asked if I was sure I wanted to do this, I laughed. “Trust me,” I said. “You can skip to the next question.”

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